We R Rare

We R Rare – Use your personal experience of a rare condition and make a difference.


Did you know that rare conditions affect more than 3.5 million people across the UK? Or that two-thirds of rare conditions can cause chronic disability? What about the fact that most rare conditions do not yet have a treatment?


Working alongside the Manchester Biomedical Research Centre, we’re working to change that and improve the lives of people with rare conditions, of all ages.


If you’ve got a rare condition yourself, are a carer or family member, you have unique insights and perspectives into what it’s like to live with a rare condition. We need your help to improve research and healthcare services in rare conditions and help patients in the future.


Your opportunity to get involved – We R Rare Steering Group

The newly created ‘We R Rare’ Steering Group is looking for 12 patients, carers and family members with direct experience of rare conditions across Manchester and North West England to join!


Meeting every two months, members will use their experiences of rare conditions to:

  • Shape the research, services, and support available to people living with rare conditions.
  • Provide strategic advice to the Manchester Rare Conditions Centre and the Manchester Biomedical Research Centre.
  • Influence the latest research projects for discovering, studying, and treating rare conditions.
  • Raise awareness of rare conditions and the challenges faced by those living with them.


By joining the We R Rare Group, you’ll also:

  • Meet other people affected by rare conditions and have the chance to share your experiences
  • Find out more about the latest developments in rare conditions
  • Offered £25 an hour as we acknowledge and appreciate the time and expertise you’re sharing with us


Don’t forget, if there is anything that we can do to support you to get involved, please do get in touch so that we can discuss it further and ensure you are fully supported to take part.


Get involved today!


We do have limited spaces in the We R Rare Group but we will have other ways for you to get involved in the future too so do keep an eye out!


If you have any questions or would like to find out more information, please get in touch with Sinduja and she’d be happy to help!